I work with a group of patient organisations, we are confident that good healthcare is achievable. We improve, we help, we challenge; we understand that medicine needs to be supplemented with good social, practical and emotional support, but we would probably all think that, overall, medicine does more good than harm.

More recently, I have been an intensive user of healthcare – my husband David is seriously ill with cancer; he has been an inpatient, an outpatient, an urgent patient, he has been scanned, and infused, and radiated, and tested, and admitted, and discharged, and all the things modern medicine does.

I think it is fair to say our overall experience has not been a good one. It is hard to judge the quality of the actual ‘scientific medicine’ that is going on – I don’t know whether he has been given the right drugs at the right time, at the right dose, for example. But everything I can judge – the quality of process, of administration, of relationships, of communication, of planning, of support, of humanity – has been pretty poor.

As I write this, I feel ungrateful and disloyal. So many good people have been involved in David’s care: intelligent people, well trained people, expert people, and at times (although not often enough) even kind people. And just thinking about cancer care: some of the progress that has been made in making this illness treatable and even curable is truly miraculous.

So how do we get our heads around this fact: we have so much knowledge, so much skill, so much progress – but still: so many blind spots, so many obvious insights not acted upon.

We all know that people will have an emotional reaction to being ill. In short, they are upset; some people are so upset they can’t look after themselves any more. Then why does healthcare still not routinely acknowledge that, and support people to understand ‘the new normal’ – how can I have as good a life as possible despite having cancer, or a stroke, or dementia?

We all know the vast majority of people live and manage outside of healthcare settings. So why is still so little done to support people in doing this? Why are information, health education, skills for self care not treated as what they are: the most effective ‘intervention’ there is?

Why do we still say we can’t afford to educate diabetes patients on how to manage their diabetes (we clearly cannot afford NOT to educate them, so why peddle this nonsense)? Why do we send asthma patients home with inhalers they don’t understand how to use? Why does David not have a number for someone to call if he has a concern about his care, his medicines, his next appointment? He has a booklet full of numbers, and everyone answering to those is very good at explaining why they are not the right person to help.

We have such intelligent people delivering such unintelligent care. I am trying to understand this dilemma.

Maybe modern medicine’s relationship to how we live our lives is akin to Formula 1 and public transport. So much skill, technology, insight, expertise and money shapes F1 - but we wouldn’t dream of asking engineers who build and run racing cars to develop an urban transport system.

We all know that in order to get lots of people from A to B on time, in moderately bearable circumstances, we wouldn’t start with racing cars. Maybe somewhere along the line, in the mix, we need some Formula 1 insights (how to change a tyre really quickly for example) – but we need a whole lot of other expertise and a very different focus to get everyone to work every morning.

Looking at it like this, I think we can do justice to the marvel that is modern medicine – I certainly wouldn’t want to go back to pre-modern medicine in a hurry – while also acknowledging what is so deeply troubling about how we deliver healthcare.

In order to find new cures and treatments, we need to focus on the biology of disease. But in order to help people, we need to enhance what makes a good life: good medicine, yes, but often more importantly, support with money, with work, with family life, a helpline that is trying to be helpful, and a way to get onto the Northern Line without having to squeeze yourself into someone else’s armpit.

I am a nurse and midwife who had Breast cancer in 2014. While I am at the other end of my mastectomy, chemo, radiotherapy, reconstruction, and on the path to wellness I cannot tell you how poor some of my patient experience was... I was appalled at the way I and others were treated. The lack of courtesy, information, and yes contact numbers! Being asked if I was a breast ?
Being told not to use my PCA as I should know better! It's tough being a patient! I wish you and your husband well xxxx

Reply

Charlotte Augst

20/9/2017 06:41:03 pm

Thank you, Melanie.

It is tough sometimes. And I do feel sorry for staff too- almost more so than for patients. At least for me and David work is a source of pleasure, support and fulfilment - many people I know who work for the NHS don't feel like that.

Thank you for a very eloquent piece on healthcare. I wish your husband well in his ongoing treatment.

I wholeheartedly agree with your assertions regarding the 'quality' of the care he, and you as his cared, have received. I would like to pick up on something you wrote as it directly links to some thoughts and work we (the Philosophical Breakfast Club) are involve in. We agree with you that there are blind spots for healthcare professionals and it is often the patients and carers that help to emlighten us to them. Therefore we should (truly) listen and understand what we are being told or we will never have those epiphanies and improve what we do. The other aspect is the learning from other disciplines. We believe in wide cross discipline collaboration to seek to understand what it is those other disciplines do, that we can understand and translate back into healthcare so we can improve and deliver better, safer care. So many of the answers lie beyond the bounds of the medical world but if we truly want to 'do better' then we must fundamentally change the paradigm and be bold on our thinking. To that end we have run and are running another conference next year where we engage leaders from these other disciplines and actively debate the issues to produce new ways of delivering better care.

Thank you for article as it has helped inspire us to continue what we believe to the the way forward.

Reply

Charlotte

1/11/2017 07:30:22 am

Sorry about picking this up so late! I wholeheartedly agree. This is not so much about something being wrong with medicine- although clearly sometimes there is- it is about allowing the medical perspective to run riot, unchecked by other concerns. This is what we have to rectify. And in order to do that, we need to strengthen the voice of people who receive care, and change how we listen to the voices of those who give care. Because often their call for more medicine will be fed by fear of failure, exhaustion, despair and so on. It sounds like your discussions are per of this way of thinking too.

Hi, I'm currently doing some preliminary resesarch with a view to trying to get funding to do some work about doctors/GP's who blog about their own health service experiences. I want to look at their motivations, experiences and potential effects of their blogs. If you would be interested in talking to me informally, over e mail or phone to help me get some ideas, I'd be really interested to hear from you
I can be contacted in the first instance on my e mail susan.kirkpatrick@phc.ox.ac.uk

Reply

Charlotte

1/11/2017 07:32:02 am

Sorry about picking this up so late. It sounds really interesting- I will be in touch via email.

Reply

Kerry

9/10/2017 04:33:29 pm

I’m on the community health council we are the patients voice and are currently fighting to stay as such.
I’m sorry you’ve had such a poor experience a good friend has been going through similar treatments luckily coming out the other side but his experience has been much more positive. There have been some problems but nothing he and his wife didn’t get answers to. If it can be done for one why not everyone b

Reply

Charlotte

1/11/2017 07:34:07 am

Sorry I am picking this up so late.
It is so hard sometimes to keep plucking away at these problems. I wish you all the best for your collective efforts.